Living with paroxysmal nocturnal hemoglobinuria (PNH) can leave you feeling flat and low in energy, like a balloon running out of helium. Even if you’re currently treating your PNH, you may be struggling with symptoms like fatigue or shortness of breath.¹ People respond to treatment differently, and some may continue to experience symptoms of anemia and require blood transfusions.²

There are lifestyle changes and tips that can help you better manage symptoms like fatigue. Communicating about PNH symptoms with your doctor is the first step, and understanding how PNH causes fatigue can also help.

Many of the symptoms you may experience with PNH are due to hemolysis, or the destruction of red blood cells.³ When you have PNH, part of your immune system, called the complement system, attacks and breaks down red blood cells that are deficient in some proteins.^1,4

Hemolysis can lead to anemia.^1,5 When your body has low levels of red blood cells because it can’t produce enough to make up for the ones that were damaged or destroyed, it’s called hemolytic anemia, which can play a role in symptoms like fatigue and shortness of breath.^6,7

Anemia can lead to fatigue because you have fewer functional red blood cells, so there’s less oxygen to provide energy to your body.³ Having fatigue may mean you feel tired and worn out, sometimes making you less able to manage everyday life.

What Is Hemoglobin?

Hemolysis reduces the amount of hemoglobin in your blood. Hemoglobin is the protein in red blood cells that carries oxygen to all the tissues of your body. Lower hemoglobin levels can lead to PNH symptoms, like fatigue and shortness of breath.^3,8

What Is a Normal Level of Hemoglobin?

Hemoglobin levels are measured in grams per deciliter (g/dL). In general, hemoglobin levels of at least 12 or 13 g/dL are considered normal.⁹

Normal adult hemoglobin levels vary, but they generally are^9,10:

• 13 to 18 g/dL for men
• 12 to 16 g/dL for women

It’s important to be aware of your hemoglobin levels and discuss them with your doctor. Monitoring hemoglobin levels can help your doctor understand how your treatment is working.

Two Types of Hemolysis

Your red blood cells can be broken down both inside and outside your blood vessels. Hemolysis that occurs inside blood vessels is called intravascular hemolysis, or IVH. Hemolysis that occurs outside blood vessels, in the spleen and liver, is called extravascular hemolysis, or EVH.¹

The most common treatments for PNH include medications called C5 inhibitors, which help address IVH. For some people with PNH, controlling only IVH may not be enough. C5 inhibitors address IVH but not EVH.^11,12 If EVH occurs while you’re taking a C5 inhibitor, you may still have ongoing hemolysis and lower-than-normal hemoglobin levels that may lead to symptoms such as fatigue.^1,11,13

For most people with anemia, symptoms are usually related to the level of hemoglobin.⁸ Fatigue caused by PNH may be disabling.¹⁴ You can take several steps to better manage fatigue.

1. Have High-Quality Conversations With Your Doctor

Participate in high-quality conversations with your doctor at appointments. Your doctor is your partner in managing your PNH, so open, honest, and detailed communication is key to getting the most out of your appointments. Keep in mind these tips for communicating with your doctor:

Report all of the symptoms you’ve had, no matter how mild.

Ongoing symptoms of PNH may include^1,3,14-16:

• Fatigue or weakness
• Shortness of breath
• Headache
• Anemia
• Bruising or bleeding easily
• Dark-colored urine
• Abdominal pain

For each symptom you mention, try to give a sense of how mild or severe it’s been and how, with specific examples, it affects your life.

Describe any struggles or side effects you experience with your current treatment.

Apart from how well your treatment is working, be clear about any difficulties you experience in taking or sticking with it. Your doctor may be able to help you overcome these issues or recommend other treatments or other changes to your regimen.

Make time for questions and answers.

Let your doctor know you have questions prepared, and ask if they can put aside time during the appointment to address them. Consider taking notes or asking to record the conversation on your phone. You may also bring along a loved one to take notes or record so you can focus on what your doctor is saying.

As your doctor answers your questions, don’t be nervous about asking them to repeat or explain information you didn’t catch. You can also ask them to recommend pamphlets or articles for further reading to help you better understand your condition.

2. Monitor Your Symptoms and Keep Tracking Fatigue

Keep track of your fatigue and how it affects you each day, as well as noting other symptoms. You may choose to keep a log on paper, write on a calendar, or use a symptom-tracking health app on a smartphone or tablet to record how you feel over time. Be clear and detailed. Fatigue, in particular, can be an “invisible symptom,” so examples can help you communicate its impact on your life. If you had trouble getting out of bed or doing daily household tasks, or you had to miss work or social activities due to fatigue, add this to your notes.

Monitoring and tracking your symptoms will provide you with detailed information about your symptoms and their impact on your life to share with your doctor.

3. Stay as Active as Possible

Members of myPNHteam acknowledge that there are ways to incorporate exercise to help them feel better.

“My experience is that exercise is important for keeping your heart and blood healthy,” shared one member. “Don’t let PNH control your life. If you’re unable to do real exercises, then do chair exercises. Kick your legs up and down while watching TV. Put a can of beans in each hand and pump your arms up and down. When in bed, hold both feet up off the mattress until your thighs ache!”

If you’re concerned about what exercises are safe for you, check in with your doctor first.

4. Schedule Activities for When You’ll Have the Most Energy

If you notice that your fatigue tends to be better or worse at certain times, do your best to plan activities for when you’re likely to feel your best.

Similarly, if you tend to have more energy in the morning or the afternoon, try to get more done during that time of day.

5. Build Your Support Team

It’s easy to feel discouraged and isolated when you’re dealing with “invisible symptoms” like fatigue from a rare condition such as PNH. It can help to find others who understand what you’re going through. Look for support groups, either in person or online, such as myPNHteam. On myPNHteam, members come together to ask questions, give advice, and share their stories with others who understand life with PNH.

Do you experience fatigue or other ongoing symptoms with PNH? Have you discussed them with your doctor? Can you recommend any tips for improving fatigue?

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